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Archive for April, 2010

Tuesday, April 20, 2010

The Google Alert That Made My Day

Below is a post from a blog entitled, “The Great Adventure,” by a lovely, devoted and determined mother named Lindsay. I came across her blog thanks to a Google Alert which recognized Lindsay’s mention of my book “Saving Henry.” Shortly after I read the post, which was yet another piece of evidence about the importance of writing Saving Henry, I got an email from Lindsay which I will treasure always.

Here is Lindsay’s blog post from Sunday, April 18:

Ever since I first heard about having another baby with the same HLA as James Thomas so he could receive a bone marrow transplant, HOPE filled my heart. While a bone marrow transplant is the last thing I want for James Thomas the possibility of it can only happen if he has a sibling who is a perfect match to be his donor. As you all know James Thomas is our only child so we have to use modern medicine to guarantee this for him. I originally said that I wasn’t going to share this part of our journey on our blog due to the uncertainty of everyone’s reactions. But after reading “Saving Henry” and “The Match” I believe being open is the best way to go for James and me. There is no way I will be able to explain everything or do a good job at it but I will try to do my best to share our story with you. My hope is that in the rare chance you find yourself in the same situation or meet someone who has to go down this path then maybe I can be there for them. I am so thankful for the people who have traveled this road before me and are open about it. It makes the process bearable.

So how do we ensure that we have an exact HLA match for James Thomas? Along with MANY prayers we will use IVF with PGD. James and I first heard about having another baby back in October when we first learned that James Thomas had Diamond Blackfan Anemia. A family friend of James’ is a doctor in Washington DC and she suggested that we try to get pregnant right away. Then in November, I traveled to New York to meet with the experts in DBA and they told us about IVF with PGD. Basically, you go through the same IVF process that family’s who have trouble conceiving go through. When the embryos reach day three of development a cell is removed from each and sent to Genesis Institute in Detroit where they will test them. Then they will implant the embryo or embryos that match James Thomas’ HLA. The reason we have chosen not to try naturally is because there is only a 25% chance of a sibling being a perfect HLA match. They will also check each embryo for the genetic mutation that James Thomas has. Based on James and my genetic testing they don’t anticipate any of the embryos having the DBA mutation but we are at a higher risk of this happening since we have already had one baby with this mutation. My initial fear was what do we do with the other embryos? It would be devastating to destroy the embryos that have the RSP 19 mutation. What if we have a lot of embryos, do we freeze them all and implant them later? Can James and I really have 6 or 7 children or on the other side could we destroy the embryos that are not HLA matches? This is the side of PGD that is very difficult. This is where I pray that you never have to even think about these kinds of things. But, from all the research I have done we would be blessed to have that many embryos because families try over and over again and some are never able to conceive a child and the ones that do feel blessed beyond words when it finally happens. One mom told me I would be lucky to have extra embryos because she never did. In fact it took her over a year of attempting to finally have her daughter (which she gave birth to a few months ago!!!). So, I do not worry anymore about that problem. I trust that God will be all over this and what happens will happen. I just pray that it won’t take James and I several attempts to get our precious baby.

We have found our fertility doctor who is going to walk us through all of this. I was nervous about him at first, mainly because I have never had a man doctor and I wasn’t sure he would be as overly compassionate and cheerleader type which I know I need. But after two consults and being assigned a nurse I know he is where we need to be. We are using Dr. Hughes with Genesis Institute to conduct the PGD. There are only two places in the US that do this and he was the pioneer behind PGD. Tomorrow we will be receiving our DNA swabs. All three of us, plus our parents have to send in swabs with our DNA to Genesis, then they will use them to make a probe to test the embryos. The probe must recognize James Thomas’ HLA in all the embryos. Once the probe is made, then we will be able to begin the IVF process. Dr. H wants to do blood work and some other prepping tests while the prob is being made. Hopefully, we will be able to begin those this week. It is a lot to process and learn but we are so thankful that medicine is able to help us grow our family and at the same time do everything possible to ensure that James Thomas lives a long, healthy life. The author of Saving Henry was asked what she says to people when they ask her, “How could you do all of this?” She said when she looked Henry she sad to herself, “How could you not?” That is our philosphy here: How could we not do everything we can to cure James Thomas no matter what the financial or physical pain it causes us.

We ask for your prayers through out all of this. As much as I do believe in medicine I know that God is in control. He has a PLAN for our family and we want Him to be all over this entire process. I always try to find a song that really hits home with what we are going through. So, this is my song for IVF with PGD. Hold Us Together by Matt Maher I will try to figure out hot to attach a link to hear the song. Hope this worked.

http://www.youtube.com/watch?v=-he2DohfwWE

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Monday, April 19, 2010

USA Today’s Your Health: “Saving Henry” Talks About Siblings as Saviors

Below is the text of an article by Kim Painter that appears in the Life section in today’s USA Today.

In 1995, Laurie Strongin gave birth to her first son, Henry. In 2002, she said goodbye to him. Henry, a boy who loved Batman bandages and Pokémon trading cards, lost his battle with Fanconi anemia, a rare, usually fatal genetic disorder. He had not fought alone: On his side were parents willing to go to extraordinary lengths and doctors offering a new, controversial form of hope called preimplantation genetic diagnosis (PGD).

The idea was that the doctors could help the couple create embryos in a lab. Then they could test the embryos and find at least one free of Fanconi and with something extra: the right immune system traits to be a perfect stem cell donor for Henry. That embryo could then be implanted in Strongin’s womb — and be born as a “savior sibling” for Henry. It didn’t work. Despite nine tries, Strongin and her husband, Allen Goldberg, never had a child through PGD. But the family became part of the public debate over whether it is right to create, test and choose among embryos for any reason. Strongin lives in Washington, D.C., with her husband and two surviving sons. She spoke with me about her new book, Saving Henry.

Q: What’s the big misconception about PGD?

A: It’s a misunderstanding about what the baby is actually exposed to. In our case, the cells would have been taken from the baby’s umbilical cord, which is usually thrown away as medical waste. … People hear the word transplant and quickly jump to the thought that you are taking an organ.

Q: But PGD has been used in other ways, including sex selection. Some donor siblings have undergone bone marrow aspiration, not just cord blood donation. Where’s the line?

A: I think choosing a boy or girl just to balance a family is an abuse of this technology and actually threatens its availability for life-and-death purposes. … There have been cases where families collected the cord blood and for one reason or another were not able to use it, and they ended up with a difficult decision to make (to allow bone marrow donation). That is a decision to be taken very seriously and made with the advice of your doctors. … But donating a kidney? That’s something I would find problematic.

Q: At the time of Henry’s death, a couple of children with his disorder had been saved by siblings conceived through PGD. How many more have been rescued this way since?

A: For children with various disorders, it’s probably between 50 and 100. In the Fanconi community, maybe 10 to 15 families have used PGD to save the lives of their children.

Q: You’ve become an advocate for embryo and stem cell research. A year ago, President Obama lifted some restrictions on federal funding. What important obstacles remain?

A: The biggest obstacle is that medical discovery takes time.

Q: What advice do you have for parents of very sick children?

A: It’s so important to find whatever is enjoyable in each day and cling to that, to find the happiness.

Q: And for parents who have lost children?

A: My husband and I have decided to get out of bed every day and give our other two children, Jack and Joe, a wonderful life, while doing what we can to carry Henry with us.

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